Woman With Porphyria Develops Unusual Blood Clot in Case Study

Taiwanese report urges need to promptly identify and treat such problems

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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The case of a woman with porphyria, who had a dangerous blood clot develop in a large vein heading into the heart, highlights the importance of identifying and promptly treating such issues in porphyria patients, researchers noted.

The report, “Inferior Vena Cava Thrombosis in a Porphyria Patient,” was published in the journal Acta Cardiologica Sinica.

A pair of scientists in Taiwan described the case of a 44-year-old woman who started experiencing unexplained symptoms, including intermittent abdominal pain, nausea, dizziness, headache, vertigo, and numbness in her arms and legs.

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Impairments in Blood Vessels Linked to More Severe Porphyria Symptoms

The patient underwent many medical examinations without finding any explanation for her symptoms. Eventually, she was diagnosed with porphyria via a urine test performed about nine months after the onset of her symptoms.

In the time spanning between symptom onset and her eventual diagnosis, the patient went to the emergency room due to the sudden onset of chest pain, cold sweating, dizziness, and difficulty breathing.

A catheter inserted into the patient’s heart revealed coronary vasospasm, an abnormal tensing of blood vessels that send blood to the heart. During the catheterization procedure, clinicians inadvertently punctured a large vein; bleeding was controlled through compression and keeping the patient immobile.

CT scans performed over the course of the next days revealed a blood clot, which researchers described as being “monstrous,” in the patient’s inferior vena cava (IVC) — the main vein that carries blood from the abdomen and legs back to the heart.

Researchers said that the bleeding-prevention steps used after the accidental puncture during the catheterization procedure might have contributed to the formation of the large blood clot.

They also noted that “thrombosis [clotting] is not [a] usual presentation in patients with porphyria,” highlighting the importance of assessing clot-related health problems in porphyria patients.

The day after the clot was identified, the woman received an implanted IVC filter, a device that can help prevent dangerous blood clots from reaching the heart and lungs. She was also prescribed the anti-clotting medication rivaroxaban (sold under the brand name Xarelto).

Follow-up imaging performed six weeks later showed the clot had disappeared. The IVC filter was then removed, and additional imaging tests showed that the IVC and related blood vessels were intact without overt signs of damage.

In the time since this clotting event occurred, the woman has had additional bouts of porphyria symptoms, but has not had any other clot-related health problems, according to researchers.